It is not down in any map; true places never are.

I’m not going to “get better” and it’s ok.

If you had asked me four years ago, when my failing health finally pushed me out of the workforce, what the hardest part about “being sick” was, I likely would’ve talked about the physical pain or mental anguish of facing my own mortality. Recently though, it’s been others’ response and receiving “feel better” sentiments. It’s not that I don’t appreciate them because I most certainly do appreciate anybody’s care and concern for me. It’s a cold world and any notion of warm in welcomed.

Maybe it was just easier to take ten years ago when I was hospitalized with “the unknown virus” and sky high fever for a week. Then the initial fibromyalgia diagnosis. Likely because that’s when I still believed I could get better. But when my miscarriage finally pushed my immune system out of whack and the vision loss pushed me over the mental edge, I was down for the count. It took another year before they found the antibodies and scleroderma attacking the tissue throughout my body, destroying my gastrointestinal tract and causing gastroparesis.

Now, the thing is … I’m not going to get better.

I realize people don’t want to hear this. I get that we wish things were different. People may even think I’m giving up, when in fact I’m simply giving in to the reality of my new life. This is something, through cycles of hoping and feeling disappointed, deciding to give up hope in order to avoid the pain of disappointment and the sadness and then the relief of surrender, that I’ve accepted in the years since my diagnosis.

This much I can tell you: Nonacceptance just increases suffering and I think the one thing we can all agree on, universally, is that we don’t wish to suffer. Acceptance doesn’t mean that I’m rolling over and taking it either.

It’s just that I have finally arrived at a point in my life that is all about accommodating to realities, living a life worth living despite my limitations and appreciating so many ways in which I’ve “grown” only because of this illness. If it weren’t being trapped in my house and bound to my bed, I wouldn’t have realized how many of the little things I miss on a daily basis. Perhaps these are things that other people can appreciate without being sick and having so much time on their hands to roll things around in their brain, but for me, that’s what it took. For that, I’m actually very grateful.

Maybe at this point you are asking yourself what you should say or do if you have someone in your life with a chronic illness. The one thing I want you to take away from this is that we don’t need you to make it better. We need your time, compassion and most importantly, your love. Only love can make it rain the way we need it to. Only love can quench the thirst we have for life that we may be having a hard time experiencing for ourselves. Texts and emails are great, but phone calls and visits are more sincere. Your time is such a precious gift of investment in our knowing our worth hasn’t diminished because of our illness.

“Better a single day of life seeing the reality of arising and passing away than a hundred years of existence remaining blind to it.”—THE BUDDHA

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16 thoughts on “I’m not going to “get better” and it’s ok.”

When I say it, I just mean, I know you are having a rough few days right now, and I hope you soon feel stronger and./or less stressed, or whatever needs to be less of! For example right now I am going through a particularly depressed time and if you said it to me, I’d take it to mean you hope I feel less suicidal, less pressed down, have more hope, etc. Better able to cope. Ya know? doesn’t mean I will never pass that way again and I accept that, too. Just means my disease gives me a break now and then!

I know exactly what you are talking about. The truth is, while I feel better right now compared to how I was at my diagnosis, I can see that I am losing ground. I wish that my family could cope with this but they can only focus on “you’re better”. Little steps, I guess.

Yes, exactly. I might have a flare up and feel better than I did when I had it but Im never going to be who I was before I got sick.
I also dont care for “hang in there?” HANG IN WHERE?! What does that even mean? lol

I had to drop out of the workforce in 2010 when I became chronically ill. Your life story sounds a lot like mine in several ways. The doctors tell me it is a miracle that I’m not bedridden by now. That someday may come however. When diagnosed, I was told there was no cure but it could get better, according to the doctor. Well, four years later, it is not better. My oldest sister says “Your quality of life is so low.” I want to say “D— it! I’m doing the best I can. Try walking in my shoes sometime.” Anyway, wish you healing and love coming your way. From someone who understands. 🙂